World KC Day

   Today was the first time keratoconus has own day to give more awareness to this rare eye disease that no cure has been found or what even causes it. Having this has taught me how to never take small things for granted. I am amazed at all the beauty every day holds and that sight is very precious.
I am happy that collagen crosslinking is FDA approve now and I hope the kind I had done (epi-on) will be in the future.  

   I know my case is not as bad as others but it is still trying on days when I take out my contact lenses out too early but I am grateful what this journey has taught me. This thing has made me more of my own advocate personally and professionally, which I don't ever want to use as an excuse to hide behind.

   Since getting my new soft contact lenses I have been testing them out. I love looking from my bedroom window at the woods watching birds and planes going by. Now, when I look at the moon I don't see five images but two which I am still very grateful for. Last week, I had tears come to my eyes when I looked at Christmas lights. They looked like the shape of their bulb instead of the typical bohek effect that I have grown use to.
  
   I am not letting this rare eye disease live my life for me. KC I have kicked you to the back seat, enjoy the ride and watch what this girl is going to achieve. 

Here is a pic from 7.11.15 during the first cxl surgery. 

   This is me after the second cxl surgery on 4.02.16. 

Going Slow

   That is what time has been doing ever since I got home 2 weeks ago from my second cxl eye surgery. The day after my birthday, my birthday was busy preparing for the trip and had to go to bed super early, my dad and I headed down to Ohio to have my other eye done since I was starting to notice the vision started to become double more. I really wanted to have the surgery done to keep the vision from becoming like the other eye.

   Friday, consisted of a 230 mile trip which meant getting up at 5:20 to get to the 11 a.m appointment. The drive down there was perfect. We timed the trip just right because by the time we got to their office my appointment was in 15 minutes. After a few tests, I got my eye dilated which was glad I only needed it done to one because it is very hard to fill out forms with both of them done :).

   Saturday, was surgery day and it was an early one, I had to be there at 7:45. This time I opted out for the sedative since I hated feeling so lightheaded last time. I also didn't take a pain med before but wished I did since the pain set in by the time I got back to the hotel room. After getting the surface of the eye buffed by a laser, I was sent into another room for 30 minutes of riboflavin eye drops every 45 seconds. Next was getting my eye looked at to see if the eye was soaked with the drops, I could have told them it was since my vision had a nice yellow tint. At this moment I had three doctors looked at, my optometrist, my surgeon and a visiting doctor.From that moment, I got referred to as Wiley's special crosslinking patient, I am guessing because I opted for no meds or the fact I am know what I need to do before they tell me.. Next, it was time to stare at the UVA light for 30 minutes, it is a little blue light that turns on for about 15 seconds and off for about the same length. After the first 10 minutes I couldn't wait for the timer to go off since I was starting a hard time seeing it.
   When it was all done the surgeon came in put drops in the eye and placed the bandage in place. Him and the  nurse said that they needed more patients like me since I made the whole thing easy since I sat perfectly still for the whole hour. After, it was all done the nurse and surgeon took my to another room to get my photo taken. I now realized why the nurse asked if I wanted my dad to come and sit with me. I sure don't look like I am 27 here. This was taken right when the pain started. I was smiling right before the photo was taken but started to fade since the nurse didn't know if she could get a pic since the camera was dying so I was caught a little off guard.

    Back at the hotel, I took the pain med but it didn't touch it so I tried to sleep for the 4-6 hours I was told to do before starting the eye drops every two hours. After I had two pain meds in me I watered to feel better, however, I still couldn't get the eye open and it was watering non-stop. The next day was not better. When it came time to get the bandage removed the doctor said this won't hurt. He was WRONG. It hurt so much that I tightened up my jaw. Thank God, for the numbing drops by the time I left I felt no pain, I just wished they lasted longer. On the way home, I had to keep popping pretzels in my mouth so my mouth had something to clamp on since the comfort drops only lasted for 10 minutes and the pain med didn't keep in until I had two in my system since I skipped taking them at night and morning. By Tuesday, I had no more pain. This was the second most painful thing in my life.

Now, my vision is changing daily so most of the time I am not wearing glasses since they are too strong. This makes it kind of hard to decided on what to do since I need correction and I believe the other eye is stable to get a new rx for glasses and contacts. I am honesty thinking of going correction free for the next three months and just living with the ghosting. I wonder how long I will stick to that since my eyes seem to get tired pretty fast.

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Very Thankful

   That is how I felt leaving the eye doctor after Friday's appointment. I was nervous about going the reasons can be found here. 

• I had a $145 bill for the lens I lost and had to pay for the replacement so I was thinking it I wad going to paying $290. To my surprise there was no cost. I don't know how that happened but I was so surprised. 
• The other thing is that I don't have keratoconus in my right eye, the data was typed wrong into the computer, instead of typing os (left eye) it was typed in as ou (both eyes).

   The vision was not good with the new contact, I could only read the second line on the chart, which I found discouraging until the optometrists said that the prescription in it was too strong. Before having the surgeries done I was in a +11.00 prescription now it will be about +1.00.

   The fit still needs some work since I felt like I could pop the lens out when I blinked but the comfort of it was good, I could almost forget i was wearing it and that was for not wearing them for about five months. That was something I didn't think could happen since none of the previous lenses did that, only the right eye did. Plus, I was not getting a glare in it, first time that never happened.

Angry at Myself

   I haven't did any kind of eye update since my three month post-op exam I had in Ohio last month, so expect this post to be long.

   It started with an early wake-up call (4;30) so my dad and I could drive the 3 1/2 hours trip down to the small town of Brecksville, Ohio. Once we were at the office I got to fill out a comfort of life survey and rate each eye to the questions with a 1-5. I find them amusing since they ask questions like, do you avoid being social because of your eye health, etc.  The reason for the questions is that this is all part of a study where they are collecting data to see how well life before and after after surgery is. All my tests results came back with nothing alarming and was given a new prescription for eyeglasses since the ones I were wearing did noting to help the vision in the bad eye. With the new lens I would be corrected to 20/25 and before it was like 20/40, big improvement.

  I can back home happy since I was given the all clear about getting new glasses and able to try the contact fitting process over. I was lucky to find a Groupon with a coupon to get my new glasses for $38 + whatever the $200 value didn't cover so my glasses cost under $50.  I can't complain about that price. I was so happy I got such a great deal and that these would allow me to see even better than I have been able to in  years. When I got the glasses I felt kind of ill from the changes, headache and lightheaded, I thought it was just because I needed to adjust to them but after 5 days of wearing them the feeling didn't improve and everything looked slanted. I could the doctor in Ohio and he said my vision changed and I needed a new prescription (the vision changed within 2 weeks of it being written out). He asked if I was going to be in the area anything soon so he  change it and I said no (as if I would do that long 7 round trip for a new prescription). He said to go to my guy in town to get the adjustment.
 
   I went to my guy two weeks ago and that is when my problem started. I got another eyeglass prescription and fitted with a new contact lens but came home finding out that I have keratoconus in my right eye too. I was shocked since neither Ohio or my local doctors said anything to me, I am guessing my local one thought I already knew since he was looking at Ohio's test results but the doctor in Ohio says just keep and eye on the right eye so I could have the surgery done on it early enough before vision lost. Besides, this new diagnosis shocker I got a sticker shock. Instead of paying the normal $85 for the one contact lens I know pay $145 for the special lens that fits better for keratoconus. I already had the special lens before but my doctor never charged me when he changed the style. Since it has been over the three months swapping period I had to pay again for the new lens. I was so happy to try the lens that I went down the the doctor's when I got the phone it was in. I decided to try it out after dinner because I knew I would have to break in the lens again. This is where it went wrong. I put the lens in waited until it settled in my eye and went to wash the solution off my hand so I could pop in my old lens in my other eye, while I was doing this without knowing it happened until it was far too late I blinked and that lens popped out of the eye. I am guessing it went down the drain since I haven't found it and it has been 6 days already. So I just watched $145 go drown the drain, so not cool.

   Since the glasses were new I  still had the one lens free of charge so I got them changed right away. I have been wearing the new glasses for a week now and I am still getting use to them. I am fighting the idea that my vision changed again since I am still getting a tad dizzy in them. I am hoping it will pass soon if not I am going back to my old glasses and saying seeing with both eyes in eyeglasses is overrated or at least for the next four months until I go back to Ohio for my last required eye exam.

  I called my doctor's office the next day to ordered a new one and I had to tell the lady what happened and I felt like such an idiot because I only had the thing in my eye for about 90 seconds. So this week I have to get the lens again and this time I will be putting it on at the eye doctor so I wouldn't take the chance of loosing it down the sink so soon. Plus, I have another eye appointment so the doctor can look at it right away to see what adjustments need to be made.  I just wish the appointment was earlier in the day since 4:30 is when I am home cooking and now it is up to my mom to do the cooking. it is not that she is a bad cook but I have been doing it for so long that she says she forgot how to.

Surgery Day

   If this post is live that means I am in an eye clinic today having the CXL eye surgery. The surgery  at 8 this morning but have to show up 15 minutes before . The bad thing I am not a morning person and I am so not one  I don't have my coffee but with the surgery that is my only no no they told me not to do. I am sure my dad will have a nervous and super quiet girl on his hands. I will be taking time off from design teams and blogging to recovery but that doesn't mean I will have this blog inactive this month. Before, I went  I have scheduled this month's posts.

Simulation and Hopeful

   TGIF. This week went by so fast for me. I ended up losing a day's worth of work because of seasonal allergies. Draining sinuses, sure can take a toll on a throat and tummy. Plus, when I get the bad allergies I run an almost 102 temp. I am happy to say I feel better. 

    A couple of days ago I came across this site that simulates your current vision as it would be without correction of eyeglasses. I thought this was pretty neat. The only thing is that it is not 100% accurate for my case. With my left eye I can't be corrected with eyeglasses because of kc, so this is how I see with them. Plus, their needs to be some ghosting (double vision). I am happy my brain figured out how to rely on the right eye when I do need to wear eyeglasses.  

  Here is how I see the world. 

http://www.eye-sim.com/?wd3gw1qt80cs

   I am currently heading for eye appointments every other week and picking up a new lens on the weeks I don't have an appointment. Since Jan. 21, I am on my 9th contact lens change. The current one seems like the fit is still off. It is the same size as my right eye (which makes it hard to pop in), curve more, thinner in the center and prescription is higher (-6.50).
   Even if this does fit, I am still thinking about going to see about a Scleral lens because these lenses vault over the cornea and are filled with a saline that keeps the eye moist. The thing that is holding me back is the time and money. Going this route might mean a new car since ours haven't been acting great. Plus, the lens could cost $4,000. yes that is only for one contact lens.
   Still, there is no word of when or if the FDA is going to approve the crosslinking. As soon, as that is done I will be getting it done. I was concerned about having the epi-off (9mm of epithelium is removed) because of the pain and corneal haze. After much research on my part, it looks like it is the one with the best outcome of working. When this does happen, expect to see this blog to be quite for a couple of months while I let my eye heal and my vision return to normal, while not normal as in that sense. After it is done my vision will be worse that what it was before.
You can see all my previous posts about KC here, here, here, here and here. 

I Stand Corrected

   Last week, I said I had was getting close to the end of my long journey of finding the right rigid gas permeable contact lens for my KC eye. I thought I had the perfect lens but  a few days after I posted that it started to give me some problems, rubbing on the eye, glaring really bad and digging into my lower eyelid.

  Well, yesterday's appointment revealed a new lens had to be ordered. This time the doctor is doing a new design. He is making it thinner on the edges so it don't dig into the lids. It is also going to be bigger, which I am not happy with because I am already having a hard time putting this one in. However, if it means a better comfort and vision I will be happy to stand on my head to pop a piece of plastic in my eye.

   During, all these appointments my parents and I have did a lot of studying on KC. It is amazing how many people are affected by this the odds are like 1 in 2000. We have seen numerous studies on vitamin deficiencies with keratoconus patients, the main one is vitamin D. I am now taking 5000 IU of vitamin D. In these studies patients had seen amazing results in their shape of the coned corneas. The ended up flattening out and were stronger. Time will tell and I am all for trying anything so I don't have to wear those hard plastic contact lenses for the rest of my life.
 
   I will have my new lens (if you lost count this is my 8th lens) on Tuesday. So expect an update on the current lens late next week.

Seeing the Light At the End

   My eyesight journey is continues.Previous posts are here and here.  It has been three plus months since I have been dealing with finding the right contact lens fit for my kc eye. I have had seven fittings and I think right now I might have the perfect one. The magic one is more curved, bigger and stronger prescription. I just got it yesterday so I am still getting use to the feel but I am thinking this is the one but will find out for sure at next week's exam.

   The prescription is super strong in my kc eye compared to non affected eye. There is a 3.5 difference in the lens strength. I was surprised the the lens strength was changed since at my last appointment I never looked at an eye chart with that prescription. I am happy to say the change was so small that it didn't affect my balance.

   When I pick up a new lens I wear my glasses there because I swap the lens for a new one and I don't want to pop out my old lens and pop the new one back (it takes me a long time getting the lens in). Anyways, I wore my sunglasses in to the eye doctor but it was too dark so I was switched to my regular glasses but in between this was happening a person said hello to me. I couldn't see who it was until he was about 2 feet from me, I might have gave him the look of "do I know you". After I got my glasses back on I said hello back to whom it was and it was no other than  my optometrist, who I have seem almost every week since the start of the year. I am pretty sure I know him. LOL. I am perfect example of the the term that implies "Blind as a bat".
   Even with the new lens my vision isn't 20/20 but I am alright with this since I have perfect vision in my other eye. I will be able to see if the new prescription has improved my distance next week. Last lenses my vision was 20/70 which is two away to be considered legally blind.

Happy Update

   Today, I had another eye appointment. If you lost count this would have been #6 since the year began. The doctor is happy on the fit of the contacts and the prescription is at the best he could get it. I have perfect vision in my right eye and about 20/50 in my left eye. That is still better than it was two months ago where I couldn't even see it at the 20/200 spot.

   The doctor told me my next appointment will be in a year. I must have looked a little shocked because he said it twice, I was expecting something like see you next month. The keratoconus is at the same stage but if I notice in any change in my vision or contact fitting I have to go back sooner.

In other words I had the biggest grin on my face when I walked out of that appointment. My mom asked me what happen and I told her I don't have to be back here until next year. When I was checking out the receptionist asked me if I wanted to make that appointment. I might be organized but I am not that organized. I am one who want to stay on top of assignments but I am also one who doesn't even know what I am doing two days from now.

KC Images

  To give you a better understanding of keratoconus, searched the web for kc vision simulators. Because I only have it in only my left eye this is only half of the image my brain was receiving. Luckily. 

   The first one is an eye chart. My sight in that eye was actually a little worse than the 3D column. I couldn't see that chart at all at the eye doctor. Yes, I ended up freaking out a little bit when this first happen. But since the contacts it is better. I currently have 20/70 vision. With my new ones that I am picking up today I will have perfect 20/20 with both eyes. I will have a very slight ghosting image still but nothing that would be any bothersome. Also, with the contacts I will be able to leave more blog comments on blogs that have word verification. Yeah. I follow so many blogs but rarely leave comments do to the hard time seeing the codes.  

In this image my vision was in between the second and third image. 

   This is why I gave up reading. It was getting tiresome reading a book with just my good eye and the book up to my face. 

    I am not doing this to get any sympathy but to share my journey and give awareness to this eye disease that is hard to explain. 

Living with KC

   This post is going to be different than my usual craft project sharing ones. Today, I am going to go on a more personal note.
 
   Four years ago, I went to get new glasses because my frames were broke and my prescription was 10 years old. I went to the mall to a Len's Crafter's and the lady had a hard time finding the right lens to correct my vision in my left eye. She referred me to Lansing Ophthalmology because she thought I had keratoconus (coned cornea). I never went buy the end of that summer I was seeing double images with that eye. Now, you would think I would have went then and there but I didn't because after searching online I found there was no cure for it and that the only way to help correct it was to wear contact lenses and I didn't want to do that because my eyes were so dry already and I didn't think I could if my eyes were any drier.

   As the vision became worse, I learned how to work around my handicap. I closed my left eye when I did close-up work in my crafting hobbies (I was so happy when my sewing machine self-threader working again), I stopped reading books because I couldn't see the words without the book in my face, I never got my driver's license because my night vision is so bad and I am so sensitive to bright light and watching television also required a little trick. I use to lay on my left side so I could only see the screen with my right eye.

   In December 2014, I knew once the holidays were over I needed to go get my eyes checked out. I was starting to notice I was only using my right eye when I did anything. I went so long not using my left eye I was actually, training my brain to not use it. Also, my vision in distance and decreased considerably since four years ago. I was once standing 15 feet away reading a sign and now I was 2 feet away reading the exact same thing.

On January 10th, I got my diagnosis confirmed I had keratoconus (KC). My doctor ordered me RGP lenses and said I need to wear these instead of glasses. Ten days later I got my first set and I am going to be completely honest, I hated them. My eyelids were so tender from rubbing on the lenses and I was blinking every second. Since that first week I have grown to depend on my lenses and it is hard to go back to glasses.

   Since this started, I have had one one complete eye exam, four contact lens exams and went back two other times to pick up new contacts. After, each contact exam my doctor had made adjustments to the prescription and shape of the lenses. As of Thursday's exam, my right contact lens is perfect but adjustments are being made for my left eye. That one needs a little more curve and a stronger prescription. In other words, I have at two more visits in the next two weeks.

   I will do a follow-up post next week to share how my vision is now and living with contact lenses since I am use to wearing eyeglasses for 14 years.